The following Podcast is of a conversation with members of Hearing Link. The discussion is led by Stephen Faithfull (EaRN Communications Coordinator) who introduces Margaret Canning, Ann Thallon and Robin Wickes who will talk about what equality means to them.
Margaret: It starts with being able to say to people and being upfront but that doesn’t come easily, it takes a long time, and sometimes by joining a lip-reading class or an organisation that can train you or give you advice on how to approach this sort of thing. It’s actually about getting confidence to do that, to say I cannot hear you, I’m hard of hearing, I’m deaf or whatever terminology you want to use. You’ll actually find that when you do tell people they are really very helpful, it’s the not doing it and trying to pretend to hear, that’s when the problems occur, you pick up things wrong, you interrupt, which I’ve done so many times, so yes, being upfront about it is the main thing and people will be helpful and I think if you have to say to people “look at me when you’re speaking to me, I need to see your face”. If they’ve got sunglasses, “please take off your sunglasses”. I have a cochlear implant and I can hear quite well but even now I still prefer if people take off their sunglasses because I still need to see their face and see their eyes, that’s very important, and beards and moustaches are not very good for us because we do all lip-read. People who think they don’t lip-read, if they’ve got hearing loss, they certainly do because that’s something that happens as the years go on and they need to see the gestures and the body language. But I think the first thing is to be upfront and tell people you do have a problem.
Robin: It’s interesting, but some of the advice is for people who don’t have a hearing loss to gain awareness of what it’s like to be deaf so that they can deal more effectively with a deaf person but other advice is actually for the deaf person, it often come down to assertiveness, being brave enough to tell people that you are deaf and that you’ve got requirements.
Margaret: I think that’s to do with self-confidence. I know in my own situation, I started losing my hearing in my forties and I absolutely was in denial about it because in my head at that point, because I didn’t understand about living well with deafness, I thought I’m far too young to be going deaf and if I say to people that I’m struggling making out what they’re saying then they’ll think I’m old and you don’t want that in your early forties. My confidence went down, I hid it for years in my job, well I thought I hid it, my daughter told me later on that when she brought her friends home when she was a young teenager she used to say to them, unknown to me, “don’t worry if Mum seems to be ignoring you, she’s not being rude she’s just not hearing you.” So it was even a secret within the family. It wasn’t really until I was fortunate enough to come across Hearing Link that I realised I wasn’t the only person, because it hits people of any age group. Alright, it’s more when you’re seventy plus but it hits people of any age group. I’ve got confidence back since I started meeting other people who are in the same boat.
Ann: I think we do try to hide it, especially if you’re of working age because you’re always terrified that the people that employ you will think that you’re losing your hearing, you’re maybe not communicating the same, you’re not using the telephone the same, which happened in my case. So you do tend to pretend so much that you can hear when you can’t because you’ve got to earn a living. In my case I did eventually lose my job, I was asked to leave which wasn’t a nice way to end your working life but I just got on with things. I found a lip-reading class, heard of Hearing Link and just went on from there and it did change my life. They put me in touch with organisations, I’ve had a cochlear implant and my life has moved on. My life has been much more interesting with having hearing loss because I’ve been able to go out there and do something for myself and that’s what you’ve got to do, you’ve got to take charge.
Stephen: Do you find the workplace attitude has improved at all?
Margaret: Sometimes, but people don’t really have the patience, they’re all busy and if you’re in an open-plan office, for people with hearing loss it’s a nightmare. There’s chatter, phones ringing, even if you are able to use the phone a little bit, if there are phones ringing all over the place and people talking it’s very difficult
Ann: I agree with you, also the people we meet through Hearing Link, one thing that we do with volunteers in Hearing Link is we go and talk to people one–to-one in a quiet place, people who are concerned about their life with hearing loss, and difficulties in the workplace come up in that or at some of the courses we run and, without doubt, access to work arrangements. I firmly believe, on the evidence of people I meet, that there is gradually a raising of awareness and with that there is less of a barrier. We’re going in the right direction because the more of us who make hearing loss normal, one in six of us – it has to be normal, it’s just a normal part of life and the more we become comfortable talking about it then the more people are more aware of it. This morning I had a meeting and a woman I’d never met before and I said “before we get started, I’ve got hearing loss and what would be helpful is if you sit there and I sit here and so on” and she immediately launched into “you know, I’ve been having a bit of trouble with my hearing” and then we had a conversation about that. Now, some way or another, she feels comfortable enough to talk about that and I feel comfortable enough to talk about it, so there’s just one tiny example where things are getting better. And I think, in the workplace, I think the bosses know that there’s legislation there, equalities legislation which is underpinning people’s rights in the workplace, and when you say, Margaret, that however many years ago, 10 years maybe, that you lost your job because of that, I hope to goodness that is no longer happening because that is against equality and the legislation.
Margaret: I didn’t do anything about it, or make a fuss about it, for the simple reason that the thought of going to tribunals and everything and not being able to hear was not worth it and I was at retirement age anyway so I thought “just go quietly and go on to the next stage of my life” and I did and it’s proved much more interesting than my job ever was. (General laughter)
Robin: It’s funny you say that, Margaret, my experience was different in a way but similar in another way, I worked for a computer company in a customer-facing role and I started making mistakes when my hearing started failing. I went to see my manager and he thought about it and came back to me a couple of weeks later and said “I’ve got three options, we can provide you with gadgetry like listeners and loops and special telephones, that would help, another option is to move into a different role where you are no longer customer-facing, we have lots of interesting jobs in the back office” but the third option they offered me was early retirement with lots of money. It was Hobson’s choice, I took the last option and retired early with a nice package but, like Margaret, I’ve never looked back. I started volunteering which is an easy thing to do in Edinburgh or the Edinburgh area, there are so many opportunities. I started volunteering with Hearing Link and Action on Hearing Loss and I go and do Deaf Awareness talks, spreading the word. As Ann said, I think it’s very important and very gratifying actually that people are becoming more and more aware of the challenges associated with deafness and the reason why it’s important is because people are living much longer these days and because age-related deafness is far-and-away the most common form of deafness. If people start living, as a matter of course, to the age of late 90s, over 100, then the number of deaf people in the community is going to swell and if the retirement age, they’re talking about the low 70s within 20 years again, by definition, there’s going to be more deaf working people in the community as well so, as Ann said, it’s good that people are becoming more aware of the challenges. It’s good that services like “Access to Work” are continuing and they have their ups and downs, like any other service, but it’s quite gratifying.
Ann: I agree with Margaret though that the key thing is the person with the hearing loss, whatever age, gets confidence to actually advocate for themselves. The other thing I’d like to say is I absolutely agree with you Robin that age-related hearing loss is, at the moment, the main one but there’s still something like 35% of people with hearing loss who are in the workplace and the greatest, growing age groups is younger people who don’t know about protecting their hearing. The headphones generation and noise-related deafness, where it used to be machine operators or people in the forces, now there’s more awareness of that and you see people with ear-defenders but you have musicians, people going to concerts, there’s more of that now, it’s protect it or lose it. All the young ones, they’ve never got earphones out of their ears and, how loud have they got them? I’ve spoken to my grandsons about it because living with hearing loss is not a nice thing, it does change your life, people view you differently and they definitely treat you differently. I couldn’t have a conversation with my grandchildren were young because their voices were low and it got to the stage where they didn’t bother talking to me anymore and I did feel shut out. And on social occasions it was the same thing, you’d sit back and you hadn’t a clue what was going on, it’s not nice. So, apart from helping people at the moment who actually are deaf, we really should go further back down the line and say, look let’s get started early on before it gets to that stage.
Stephen: It seems to me from what you’ve all been saying, that the technology is there but the uptake of it, for whatever reason, even when you’re talking about kids with headphones on, there is volume limiter software on iPods for example but it’s whether or not they actually use it. And with Hearing Loops, an organisation might be in a building with them but it’s whether or not they adopt it. Would you say that’s fair to say the technology is there and if it is, what do you think the barriers are that stop people adopting it?
Ann: The technology is much better and it’s getting better all the time. There are financial aspects to that and I think it’s worth saying, even though it’s a bit of a cliché, that when you’re short sighted you get a pair of specs or contact lenses and perfect clarity of vision, in most cases. You get hearing aids, you get apps on your phone, you get an excellent working loop, it does not give you back the clarity, it always takes more effort and now they’re showing that untreated hearing loss is a contributory factor in the increasing number of people who have got dementia and Alzheimers, so there’s another thing. But the key thing there is to do all you can to keep involved, to keep included, to use whatever technology you can get hold of and some of it’s free, like hearing aids through the NHS, I’ve got fantastic hearing aids and they don’t cost me a bean, but that’s people’s circumstances and choice but, however good all of this is, it’s not the same as contact lenses or whatever because it’s more complex.
Margaret: For severe hearing loss, as I’ve got, hearing aids are no good because you lose the clarity of speech, it’s tinny, Mickey Mouse, I used to always say to the audiologist “Could you tune me in?” the way I described it was a radio of the station. I just wanted to tune in, you want to tune your radio, and I just wanted to be tuned so that I could get the clarity of speech because it sounded better. Even people that I knew, their voices weren’t the voices that I remembered, it was a tinny sort of voice. Even my own voice had changed so much, I didn’t know I was speaking too loud and this type of thing, many times I was told to sssh and you need to be quiet because you had no idea how loud you were speaking.
Stephen: And that’s interesting because I think there is a misconception about hearing aids and hearing loops that once you have them, assuming they’re correct and they’re being used properly, that’s it fixed and you’re back to where you were. But of course that’s not the case, it’s better than maybe not having them at all but it’s a long way from what you had before.
Margaret: Don’t get me wrong, the hearing aids and the technology, it’s wonderful, it’s just really when you get past that part and it gets severe to profound, really any technology is not really working and I was so lucky to be offered this cochlear implant.
Robin: The technology is improving all the time. I don’t think we’ll, not within the foreseeable future, will we get to the point that hearing aid technology is as effective for deafness as, as Ann said, as glasses are for short sightedness. The other issue around hearing aids is they’re not seen as cool. And somebody mentioned the challenge of noise-related deafness for young people.
The following discussion was recorded earlier and features Robin Wickes interviewing Ann Thallon and Margaret Canning about Hearing Loops.
Robin: Hi everyone. This is Robin Wickes and I’m joined in the studio today by Ann Thallon and Margaret Canning. All three of us have a hearing loss and we’re going to discuss a survey that the charity Hearing Link has been running into hearing loops.
Now, Ann. Am I right to be disappointed with the results? What I’ve read is that they surveyed 732 premises that could reasonably expected to have hearing loops installed for customers with a hearing loss. And only a third of them had a satisfactory loop installed. The other 2 thirds had either no loop at all or a loop that wasn’t functioning properly.
Ann: Yes, the results are disappointing to say the least. Hearing loops are a very basic way of helping provide equality for people with a hearing loss. They’re easily available, at a reasonably low cost, and are simple to operate and maintain. So there’s no excuse for these poor results.
Robin: So, Margaret. How does a hearing loop contribute to equality? How much difference does it actually make for folk with a hearing loss?
Margaret: Well a hearing loop helps in a couple of very important ways. First of all, it carries sounds to your hearing aids. In a large meeting room for example (or a classroom or a church) a loop installed around the edge of the room captures the sound of the speaker’s voice through a microphone attached to the loop. The sound of the speaker’s voice travels round the loop and is picked up automatically by hearing aids worn by listeners sitting near the loop. Unless there’s a loop installed, people with a hearing loss like to sit near the source of a sound so that they can hear it better. That’s why a hard of hearing person tends to sit near the TV. But if there’s a loop to carry the sounds all around the room, people with a hearing loss can sit anywhere and it’s as though they’re right beside the speaker, because the loop carries the sound to them.
Robin: Yes, I can see that that’s a real benefit. What’s the other benefit that you mentioned?
Margaret: The other major benefit of a loop is that it cuts out background noise so that the listener can hear what’s being said without it being interfered with by other sounds.
Robin: That sounds useful. How does it work?
Margaret: Well, in order to pick up sounds carried by the loop, hearing aid users need to press a button on their hearing aids which tells the hearing aids to tune into the loop. Once this button has been pressed, the hearing aids will automatically pick up sounds carried by the loop – I mean the sound of the speaker’s voice captured by the microphone. The interesting thing is that pressing this button means that the only sounds that can get through to the hearing aids are the sounds carried on the loop. No other noises are picked up by the hearing aids – I mean noises like background chatter or traffic noise. This is very important because hearing aids by themselves aren’t very good at excluding background noise. In fact, without a loop, background noise can make it very hard for a hearing aid user to hear what’s being said. But with the loop, what’s being said into the microphone is the only sound that hearing aids pick up.
Robin: Yes I see what you mean. Going back to the survey, I see that about three quarters of the places surveyed had a loop but that the loop was working satisfactorily in less than half of these. In other words, there’s a large number of organisations that have invested in a loop but it doesn’t work properly. Is that right, Ann?
Ann: Yes. Many organisations seem to have a box-ticking mentality. They understand that their hard of hearing customers need a loop. In fact they probably understand the 2 major benefits that Margaret mentioned – carrying the sound to your hearing aids, and excluding background noise. So they spend some money and install a loop. What’s missing are the processes that need to be followed to make sure the loop is working effectively. For example, someone has to be responsible for making sure it’s turned on and the battery (if it’s battery-powered) is charged up. The best approach is to buy a loop-testing device and to set up a process to make sure the loop is tested first thing every morning. Having a loop using person with hearing loss to try out the system is also a good idea. And (of course) the staff need to know what to do and who to call when there are problems.
Robin: Well, thanks very much for talking to us, Margaret and Ann. I think you’ve explained why hearing loops are important. It sounds like a really valuable survey by Hearing Link and no doubt they’ll be running another survey in due course to see how things have improved. Let’s hope there’s a big improvement.
Ann: There’s already very positive progress in some parts of the country, where Hearing Link volunteers and members of the public are working with local businesses to improve hearing friendliness and access to working loops – so we’re really hoping that a big improvement in equality of access is within sight!
Robin: Fingers crossed for that much needed big improvement then!